Re:CARLA !! na & Inspirational Reading 8)

[Guest guest]

Carla

Both my youngest son Pat and I ( marcus ) have the bung eye since birth.

When I was 4 years, a real nice doc, suggested he remove my eye and take a

look inside !!!!!!!!!

He'd be either real old or DEAD now so that makes me feel a little better

about it !!!!!!!

See ya ! Marcus !

>Ya I figured it was NF1. I can usually tell the

>difference in the two but sometimes it gets me because

>of the way some of us (2's) get the skin tumors on the

>outside and how we both (I think 1's and 2's) can get

>the optic tumors. I had a big one removed when I was

>diagnosed. It was behind my blind eye though so I

>didn't have to worry about losing vision lol. I think

>one of the neatest things I learned when I joined this

>Crew (I was totally in the dark on NF2, but had

>already had 2 surgeries and was freshly diagnosed) was

>that my rare and " unrelated " blindness/lazy eye/scar

>tissue since birth on the left was in fact an NF2

>trait. Some drs will still swear it's not related but

>I've met a load of ppl (here!) with the eye thing just

>like me. I've never seen it documented anywhere about

>this. Maybe kids who have this ought to be checked

>out, or maybe it's too common to point to NF2 for this

>reason. Growing up I never knew another kid with an

>eye like mine. Now I know lotsa people just like me.

>Just rambling.

>I cc'd my earlier post to na bc I wasn't sure if

>she was reading her Crew mail lately and my " internet

>detective " was kind of a joke with her. If she

>approves me to tell the story I would love to share it

>with you. Or better yet, maybe she'll help me tell

>it. It's definitely a Guideposts type story!

>talky tonight,

>Carla ~ who gets to fill in for again as LB on

>the Social List!!!

>ps, cute Red Dog, did ya find any paw prints?

>

>carla,

>

> wow that is interesting. bet she has nf1, i once

>read a longggg time ago that nf1er's can get optic

>nerve tumors. i

> really think what i read was out dated though -- it

>referred to nf2 as the famous von reckinghausons

>thing.

>

> is johnna off the crew? noticed you cc'ed her.

> :-)

>

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